Side effects going off Carbimazole

[Lindsay446]

Hi All

Got trab test done and endo decided to take me off Carbimazole after I was stable on a low dose of 5mg. Currently been off them now 4 weeks and I don’t feel great? I can’t sleep, feel nauseous, dizzy, have pain/aches in my legs and I feel irritable. Is this normal?

[Buddy195 Administrator]

Hi Lindsay446 & welcome to the forum.

Can you share your thyroid antibody tests with us, plus levels for TSH, FT3 and FT4 (with ranges in brackets).

If your GP/ endo is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health: thyroiduk.org/help-and-supp...

Have you tested key thyroid vitamins (ferritin, folate, B12 and Vit D)? Having these optimal supports thyroid health.

I was initially misdiagnosed as having Graves, as later antibody tests showed Hashimotos and an under active thyroid, so it’s very important to have the correct tests.

Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

 TRab TSH receptor antibodies 

TSI Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.  

TPOab Thyroid Peroxidase antibodies

TGab Thyroglobulin antibodies

[pennyannie]

Hello Lindsay and welcome to the forum :

These could be symptoms of whatever caused you to be put on the Anti Thyroid drug but we need more information from you to help you better understand what is going on.

Presumably your immune system has been triggered to turn and attack your body, rather than defend it, but why - was Graves Disease mentioned as the cause ?

Depending upon your diagnosis this might be relevant :

pubmed.ncbi.nlm.nih.gov/338...

[PurpleNails Administrator]

How long had you been on carbimazole? Was Trab previously positive confirming you have Graves? 

When on low dose of carbimazole and Trab falls to negative levels it is a good sign you will stay in remission.  

Usually if treatment is stopped before 18 months doctors are rushing the process.    Many need longer to keep thyroid stable. 

If on extremely low dose of carbimazole and it causes hypothyroid levels then stopping early is the only justification to cease early.  Have you kept track of TSH, FT4 & FT3 levels. If you have them post them with lab range.

I have been on carbimazole over 4 years continuously, my hyper is not autoimmune.